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Back To School August 16, 2013

Filed under: Uncategorized — ryangrace11q @ 1:05 am

The first day of school is tomorrow so I wanted to get out a quick update before I get too busy.

Since our last post, we had a great vacation in Hilton Head.  The girls loved the beach, although all the sun, sand, and sunscreen was a bit overwhelming for Ryan some days.  On more than one occasion she rubbed her sweaty little face with sunscreen-covered hands and irritated her eyes so much she could barely keep them open.  She couldn’t finish her bottle or lunch before needing to just pass out from exhaustion and frustration and sleep it off for the afternoon.  Even though she didn’t spend as much time in the sun and surf as Charlie, she had some relaxing walks in the shade, some good meals out, lots of fun exploring the condo, and good bonding time with Grandma and Grandma!

First night at the beach - loving it!!!

First night at the beach – loving it!!!

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Cool chick

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Loving her walks!

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Hey mama!

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We tried goggles one day so she wouldn’t rub her eyes… it kind of worked.

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Mommy and Roost

We have also gotten the results from Ryan’s allergy/immunology panel.  The good news: she has NO allergies.  The bad news: she has low immunoglobulins.  In layman’s terms, she’s not producing antibodies.  Now we know why she’s always sick but it will be weeks before we find out what we can do about it.  The doctor that ordered the blood work had his nurse call us to tell us that we needed to go to Children’s Immunology department, that there might be a chromosomal problem (duh – we know that) and to get the first appointment available.  He basically blew us off. It was very weird.  I called our regular ped because she’s the one that recommended him and she was mortified…. especially considering his specialty is IMMUNOLOGY!!!  So she sent the referral over to Children’s (since the actual immunologist didn’t) and they have her results and will be reviewing them and getting us an appointment in the next few weeks.  The waiting sucks.  The girls go back to daycare full-time starting tomorrow and we can only cross our fingers that the antibiotic she’s on will take care of all the germs she’ll encounter until we get some real answers.

But right now, nothing is stopping Ryan!  Her gross motor development is really improving.  She seems so much more at ease with her movements.  She doesn’t seem so awkward and timid, in fact, she seems downright confident.

She likes eating with one leg up.

She likes eating with one leg up.

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I. will. get. on. this. chair!

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Downward Roost.

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Hi!

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Big girl!

Tomorrow Katie takes Ryan to the eye doctor.  We’re hoping that Ryan doesn’t need her glasses anymore, considering she won’t keep them on for more than 2.2 seconds.  She also has a follow-up with the ENT on Tuesday for her tubes, and probably a hearing test because I blew off making that appointment a few months ago.  I know she can hear.  And we’re still waiting on her orthotics to come in.  Fall looks to be as busy as ever… but most importantly… someone turns 2 next month!!!!

 

One Response to “Back To School”

  1. Bonnie Nuxhall Says:

    Great pictures. Sounds like she has made a lot of progress! Go with your guts on doctors. What Jeremy found is that he had to be the advocate for Faith. Many doctors do not know about the specifics of your child’s issues and you have to become the expert. He kept a notebook of all medical information, reports from doctors visits, blood work, etc. The trick is finding the doctors that accept that they are NOT the expert and will listen to your input. Did you get my email on the 11q research? I am off to visit Jeremy and Faith next week. Faith is starting school on Monday. Have a great school year! Bonnie


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